Chinese General Practice ›› 2022, Vol. 25 ›› Issue (10): 1275-1282.DOI: 10.12114/j.issn.1007-9572.2021.00.308

Special Issue: 儿科最新文章合集 肿瘤最新文章合集 患者家庭因素相关最新文章合集

• Evidence-based Medicine • Previous Articles    

Caregiving Experiences of Family Caregivers for Children with Tumorsa Qualitative Systematic Review

  

  1. 1.Department of SociologyNanjing UniversityNanjing 210000China

    2.Research Institute of Social DevelopmentSouthwestern University of Finance and EconomicsChengdu 611130China

    *Corresponding authorHE LongtaoAssociate professorMaster supervisorE-maillzhlt01@hotmail.com

  • Received:2021-08-11 Revised:2021-09-25 Published:2022-04-05 Online:2022-03-28

肿瘤患儿家庭照护者照护经历的质性系统评价

  

  1. 1210000 江苏省南京市,南京大学社会学系
    2611130 四川省成都市,西南财经大学社会发展研究院
  • 通讯作者: 何龙韬
  • 基金资助:
    教育部2020年度人文社会科学研究社会学青年基金项目(20XJC840001);中国博士后科学基金第69批面上资助(2021M691521)

Abstract: Background

As the most direct caregivers, family caregivers play a crucial role in caring children with cancer. Qualitative studies on their emotions and experiences have reported that they face great challenges and pressures during caring children with cance.

Objective

To perform an integrative synthesis of caregiving experiences of family caregivers of children with cancer, providing evidence derived from practice for improving the caring for such children, and their family caregivers' physical and mental health.

Methods

Qualitative studies regarding caregiving experiences of family caregivers for children with cancer were retrieved from Web of Science, PubMed, EmBase, Medline, CNKI, and Wanfang Data from inception to June 1, 2021. Literature screening, and data extraction were performed by two researchers, separately. Methodological quality was assessed using JBI Critical Appraisal Checklist for Systematic Reviews and Research Syntheses. And the results were synthesized using an integrative review approach.

Results

Twelve studies were finaly enrolled. Thirty-eight complete evidence of 11 types arose from the synthesis and were summarized into two themes: (1) care challenges and burdens; (2) care resources. Each primary topic encompasses multiple sub-topics.

Conclusion

We found that family caregivers face a variety of burdens and challenges, and they attempt to actively solve them using their own strengths, supports from their own personal networks, other people, external sources (non-governmental, public and supportive policy resources) , culture and belief, as well as knowledge about hospice care. To relieve their care burden, and improve the quality of life of these children, it is suggested that medical workers should provide these caregivers with targeted guidance and supports with the features of the specific treatment phase of the children, and their caregivers' caregiving experiences and culture taken into consideration.

Key words: Family caregivers, Pediatric, Tumors, Caregiving experiences, Qualitative, Systematic review

摘要: 背景

家庭照护者作为肿瘤患儿最直接的照顾者,在照护肿瘤患儿的过程中扮演着重要角色。有学者采用质性研究方法,对家庭照护者照顾肿瘤患儿过程中的感受和体验等进行了研究,发现家庭照护者面临着巨大的困境与压力。

目的

系统整合与评价家庭照护者照护肿瘤患儿的经历,旨在为改善肿瘤患儿的照护现状及促进其家庭照护者的身心健康提供循证依据。

方法

于2021年6月系统检索Web of Science、PubMed、EmBase、Medline、中国知网和万方数据知识服务平台中与家庭照护者照护肿瘤患儿经历相关的质性研究,检索时限为建库至2021-06-01。由研究者根据纳入排除标准独立筛选文献、提取资料后,采用澳大利亚乔安娜布里格斯研究所(JBI)循证卫生保健中心质性研究质量评价标准评价纳入研究的质量,并使用汇集性整合方法对结果进行整合。

结果

最终纳入12项研究,提炼38个完整的研究结果,归纳出11个新的类别,并得到2个整合结果:照护困境与负面影响、照护资源。

结论

家庭照护者在照护肿瘤患儿的过程中,虽然面临着各种挑战,并承受着较大的压力,但能积极地从自身、他人(处)、"非人"的外部、文化与信仰(中)汲取前行的力量,并从安宁疗护中感受到生命的尊严。医务人员在为家庭照护者提供帮助时,需考虑患儿治疗阶段的特点、照护经历影响的两面性和照护者的文化属性,有针对性地给予照护者支持与引导,最终减轻肿瘤患儿家庭照护者负担的同时,提升肿瘤患儿的生存质量。

关键词: 家庭照护者, 儿童, 肿瘤, 照护经历, 质性研究, 系统评价

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